You love your kid? Too bad! UPDATES!

It’s really too bad that you love your three-year old daughter who needs a kidney transplant, because you know what? We’re not giving her one because she’s retarded!:

I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.

A bit of hope. I sit up and get excited.

“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”

“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing.’
[...]
He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your family are with Amelia.”

Imagine that — a mother and a family being “involved” with their developmentally delayed daughter. The nerve. And they want this lesser being, this thing of theirs to have a surgery that should be saved for real people whose lives matter! Not that thing in the stroller!

Oh, we are in for some seriously terrific battles, folks!

Right now, I kind of wish Ted Kennedy were alive. Many don’t realize it, but a case like this was precisely the sort of circumstance under which he’d pull together his little Irish cabal of doctors and friends and get the thing done.

Right now, that’s what this family needs: a well-connected advocate, like Ted Kennedy.

I know it’s an irony, seeing as how his commitment to socialized medicine helped pave the way for Obamacare and the “death panels” even Paul Krugman admits will come into play.

Assessing people as units is evil. Determining that they will not receive life-saving treatment because their life doesn’t seem like much to you, is evil.

Amelia’s life is the life she has. She’s entitled to it.

UPDATE I:
The internet brings light

UPDATE II:
ABC News has picked up the story:

Instapundit links! Thank you Glenn Reynolds!

Also writing:
Sherry Antonetti
Frank Weathers

About Elizabeth Scalia
  • Deacon Rick

    When I first read this story, it made me furious. My oldest daughter, who is 33, has many challenges as a result of a car accident when she was 16 months old. To think she would be denied any life saving procedure because of someone’s “measure” of her quality of life inflames my sense of what is right and just. I hope someone brings this story to the floor of the House and Senate, to make those who voted for Obamacare squirm in their seats.

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  • http://elizabethk-fthnfort.blogspot.com/ Elizabeth K.

    This makes me nauseous. I am so scared, and sad, reading this. And THIS WILL NOT GET BETTER UNDER OBAMACARE!!! This is the future! Sorry for the all caps. I am just. . .ill.

  • leahlibresco

    Do you object specifically to using developmental delays as a criteria in organ transplants or do you object more generally to prioritizing transplants for the patients whose likely outcomes are the best? People with certain diseases that they acquired through no fault of their own are turned down because their disease makes it unlikely the transplant will be sustainable in the long term. Do you object to this kind of reasoning in all cases where donor organs are limited or do you just think that mental retardation is likely to be a poor predictor of the outcome of the transplant?

    [Leah, it's really pretty simple for me: if you are going to err, you err on the side of life. This family has said it will donate kidneys; the hospital doesn't care. One of my brothers had a severe stroke at a young age and was left badly brain damaged and he had other complications. He lived for another 35 years -- not the life I or anyone else would crave, but it was the life he had, and he lived it; he was capable of feeling joy, sorrow, excitement; he enjoyed music to an astounding depth. A few years before he died, he got pneumonia, and one of his lungs needed to be reinflated, and the docs were amazed that we actually wanted that to be done. The message we rec'd loud and clear was "but look at him! Look at his life! Why not just let this thing run its course" to which our answer was, "because it is his life; he's entitled to the life he has." This is not about him being valuable to us or Amelia being valuable to the people who love her. Even if no one loves you, the dignity of the human person matters. When we stop seeing a patient as a human person and perceive her only as a unit, or assign a value to her that supersedes the mysterious value of love, then you're surrendering your own humanity to a cold pragmaticism that will eventually suck the life from the world. If we err, let us err on the side of life. That's all -admin]

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  • http://elizabethk-fthnfort.blogspot.com/ Elizabeth K.

    Leah, perhaps you didn’t read the entire story, but her parents and family members are willing to be donors. They’re willing to say, “OK, she’s not on the list” (even though they shouldn’t have to). Moreover, the parents were told that her mental retardation was the main reason; of secondary concern was her possible reaction to the post-operation drugs, which, as the doctor himself points out, is also a concern for any child who receives the transplant. There’s nothing about being mentally retarded, per se, that means a poor outcome for this child’s potential transplant.

  • Dorcas

    Look, just to give the doctors and health care team the benefit of the doubt: the mother’s account of her meeting with the doctor is very emotionally overwrought, and by her own account she immediately started melting down and making accusations. The doctor’s first langauge is not English, and he may have been simplifying the reasons behind the transplant denial. From what I have read elsewhere on the net, the child is likely on a host of medications to prevent seziures and other symptoms of her disability, which would need to be discontinued in order for the child to take the immune-suppressing drugs that allow transplants to succeed. So, in this sense, yes, her disability would have an indirect impact on her quality of life post-transplant. If that is the case, it may be that some other treatment would indeed be required for better quality of life, for example long-term dialysis. We can’t simply go by the mom’s account; naturally she is very defensive, but her reaction seems very dramatic and publicity-seeking, rather than reasoned; I distrust this reaction as a guide to the facts of the case, although it is a perfectly natural and understandable one for a mom to have. I am sure that there is medical discrimination against those with mental disabilities, but in this case, I think it is unfair to jump to that conclusion just yet.

  • Rhinestone Suderman

    In which case, wouldn’t it have been better to send in a doctor, whose first language was English, so that there wouldn’t be any misunderstandings? (Seeing as the parents are English speakers?)

    Dialysis wasn’t offered. Neither was any other form of treatment. The parents were told, basically, that they should let their child die—something, I think, that would make anyone distraught, and unreasonable. If it was a matter of simple misunderstanding, they should have sent in a different doctor, who could make himself understood, and who wouldn’t foolishly try to simplify things. If the problem was actually the child’s physical condition, then they should have been told that, and that the denail was because the little girl is retarded.

    I suspect there was no misunderstanding here, however. The message heard, was the one intended. The doctor said what he, and the hospital he works for, meant to say.

    This sort of treatment does tend to make parents of special needs kids somewhat defensive, shocking though that might seem to some.

  • Rhinestone Suderman

    Up above, I should have said, “And not that the denial was because the little is retarded.” To reiterate, if the problem was, indeed, the child’s physical condition, the parents should have been told that, and not that the transplant was being denied simply due to retardation. Sorry for the goof!

    (The remarks of the social worker, who, apparently, had no problem with English, along the lines of, “Who’se going to take care of her in 30 years?” etc., support the idea that—no, there was no misunderstanding here, and the denial really was due to the fact this particular child was retarded.)

  • http://elizabethk-fthnfort.blogspot.com/ Elizabeth K.

    I agree RS, it seems crystal clear from the exchange, as given, that there was one reason for the denial. They weren’t offered alternatives. If you read the responses to her post, as well, this isn’t an isolated incident. It happens all the time, quietly, and often parents are dismissed as being too “emotional.”

  • Rhinestone Suderman

    Because, of course, parents should never become “emotional” when told they must just sit back and watch their kids die. /Sarc.

    Having a special needs child of my own. . . well, we’ve got a good doctor now, but it was a long, hard haul, finding him. I’ve have doctors scream at me, for bringing my son into their office.

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  • http://simplyfulfilled.wordpress.com Bryn

    This article brought tears to my eyes. My children are one of the greatest sources of joy I will ever experience. I cannot imagine a doctor in the United States, the land of the free, basically sentencing any of them to death.

    It’s a slippery slope – women getting tested during pregnancy to make sure that their babies are “normal” and then aborting them if they aren’t. We should have seen something this coming after Roe v. Wade. I’ll be praying for all our healthcare professionals, our government officials, and everyone who just needs medical treatment in this country.

  • http://catholicsensibility.wordpress.com/ Todd

    Stinkbomb of the day: it’s at least as likely to happen under the GOP. Arizona already has death panels. The best solution is to junk all insurance providers and go to national insurance for all. I wouldn’t trust medical insurance to the profit-motives of corporations, at least not until we get the right to vote for their CEO’s and other policy-making personnel. At least the with the federal government we can vote people out of office when their policies shift to benefit the 1%.

  • From a Research Lab

    Wow. Knew this was coming. We’ve figured out how to give people with full blown AIDS a transplant. My boss was a pioneer in that. We overcame the bias against people with AIDS, yes, humans, full people, who used to be so discriminated against. And trust me, many of them are not fully with it mentally. Now we have to overcome the discrimination against those with mental issues. Hard, since, we already annihilate 80 to 90% of them pre-birth. So, when we’re faced with them, our society often balks. And, the Hippocratic oath is usually edited and not taken fully. So, do no harm no longer applies. Plus, hospital ethics are usually now rather contrary to the Truth, i.e., Christ and His teachings. So, might be time to take our energy from the com boxes of life and get out and march, write letters to editors, write to congressmen and senators like the usually hated Kennedy, etc. A lot of the writers in these blogs sure are great writers. Be great to see some of you in the editorial pages.

    My own niece, aged 3, has DS. My inlaws have had to fight fight fight for a doctor or team of docs that understand the issues and want to help the child. They finally found one but it was a long search. Even then, parents have to become their own experts in hospital ethics boards and how to get around their cracked logic and lack of morals/ethics, they have to become mini-legal experts at times, they have to do extensive research on their child’s condition(s) and all while holding down jobs, running the home and etc. Let’s remember to pray for them and the vast stress they have. If they break down under such a blatantly cold sentence as was handed to this mother, then it is reasonable for them to do so considering the majority of the culture and medical world already opposes them. Trust me, they feel they are the surfer fighting the impact zone of the tsunami of death. Getting emotional? Yes. A perfectly reasonable response in this situation. Unless one is cold and chained to being perfectly reasoned and intellectual at all times. One must keep in mind the enormous minefields the parents are already navigating.

    Where is the mercy?

    Where is the compassion?

    What are we all doing about it besides venting off in com boxes? Rhetorical question. Please put the spears away.

    If any of you care enough, come out on Sat., Jan. 21 at 11am in San Francisco’s Civic Center plaza to show you really do support life. Or go to DC on Monday the 23rd to march with the marchers. Its but one small way to help change the culture.

  • http://elizabethk-fthnfort.blogspot.com/ Elizabeth K.

    Bryn–I agree. I think of how much resistance I faced for simply refusing to get bloodtests that would likely lead to an amnio each time I was pregnant–with my third pregnancy, the doctor insisted I see a genetic counselor–talk about wasting time and money! We’re sliding down this slope pretty quickly, I fear.

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  • Milwaukee

    This is awful, horrible and heart-wrenching. Now I need to go pray, I can’t read anymore of this.

  • http://www.tempeteaparty.org Lee Reynolds

    The wages of Socialism are death.

  • JWnTX

    Todd–you’re daft. The GOP would NEVER deny a parent or family the right to fight for their child’s life. I remember the stink raised against the GOP for trying to save a young woman, Terri Schiavo, whose family was more than willing to pay her costs and tend to her needs for however long they could. The GOP was called every name in the book for trying to stand up for a young woman who didn’t have the capacity to stand up for herself.

    As for insurance companies, I’d trust a regulated insurance industry FAR more than I’d trust a bureaucratic quagmire that will be Obamacare if not repealed. If you had any experience, you’d feel the same, believe me. The 1% will be fine with or without it. They can afford to buy care at any cost. The rest of us will suffer, however–and there won’t be anywhere we can turn to appeal the government’s decisions. They will be final and without recourse. And as the money dries up, as it inevitably will, we’ll be denied care for more and more conditions that could be successfully treated.

    I feel for this young girl. And while I understand the “rationale” behind some arguments in favor of the doctors’ decisions, I don’t think any family should be denied the right to care for their children if they are willing to make the sacrifices necessary. That’s what freedom and liberty mean to most people. Not having people dictating what “quality of life” means. That’s for US to decide.

  • Matchr

    In socialized medicine there is NO charity. In socialized medicine there are NO
    charity hospitals such as the Burn Unit in Texas, or as St. Judes.
    When all the compassion, passion for healing, and love has gone from caring
    for the ill has gone, what you have left is a unit that looks only at saving money
    and not lives.

  • Richard Johnson

    This is indeed an atrocity, but unfortunately it is not unique. It is not even uncommon. Folks have been hearing this kind of rejection for many, many years under our current health system. Most of the folks who are rejected are victims of insurance companies who do not see the benefit of spending money to extend the life of a senior citizen another few years, or who decide that the ongoing care after a catastrophic accident will be too much of a detriment to the bottom line of the company.

    That so many on the right are now sensitized by this due to the threat of “death panels” from Obama/Romneycare is a good thing. Better late than never. But don’t think that you will solve the problem by simply overturning Obama’s bill. Insurance companies are as immoral as the government, but have for way too long had the protection of conservatives. Maybe that is changing. If so, great.

  • http://atlantarofters.blogspot.com The Sanity Inspector

    Just terrible.

  • barry

    Yea, that Ted Kennedy was good for kids, he really did all he could to save unborn kids from certain death.

    [I knew someone would have to come in and drop that. As though I have not written plenty about how his contributions to the pro-aborts helped turn that egregious and murderous tide. Are we never to give anyone their due? Are we not to see a whole person, just the parts of them we want to see? Sorry. As much as you might hate to know it, Kennedy often helped kids who needed help. I know, it's awful. How dare I mention it -admin]

  • skatblueeyes

    Anyone who is surprised by this hasn’t dealt with the medical profession lately! My father had Alzheimers – he knew me & each of my 7 brothers & sisters by name, could sing hymns, 40s hits by heart, etc. Long story short since I had power of attorney, the doctors & social workers ACTUALLY TOLD ME TO LET MY DAD STARVE TO DEATH! Nor did they want to give him anti-biotics. When I said to the social worker, “I have horses & dogs. If I let them starve to death or die a horrible death because I wouldn’t get them medication, I’d be in jail for animal cruelty!” Her reply, “That’s true, but we aren’t talking about animals.”
    She also said,”This isn’t going to work if you don’t get on board.” My reply,” I will never be on board with starving my dad to death!”
    She wanted to know why I wanted to spend money on a more comfortable bed for my dad at his assisted living when he was released from the hospital! How about because it’s HIS MONEY, not mine, that he & my mom saved & it would make him feel better!
    All of this is true – we are living in scary times & we are at the mercy of very cruel people!

  • http://paterzplace.blogspot.com DonM

    Before Hitler killed his first Jew, Germany had an organized program to euthanize the crippled, the retarded.

    In the US, a man crippled by polio was elected president. In Germany they would have put him down.

    Socialism kills. Death Panels kill.

  • http://paterzplace.blogspot.com DonM

    In a free society, if you want to help people, you will not be stopped. In a state regulated society, the State will tell you what you can do, and if you want to do something not considered desireable by the State, you will be stopped.

  • Not a lib

    I agree, actually. Why waste an organ on someone who knows no difference and never will.

  • http://agibsongirl.tumblr.com Emily D.

    I’m a double-lung transplant recipient. Transplantation is so difficult, and I wrote a blog post about my feelings about this: http://agibsongirl.tumblr.com/post/16027588726/amelia-and-transplantations

    But, succinctly, this is what was a big indicator for me:
    (from ABC news)
    Patients can be denied an organ transplant for a variety of reasons, according to the American Society of Transplant Physicians. Transplantation will not be offered to those would could be harmed by the surgery itself or by the immune-suppression that is required to prevent organ rejection.

    Patients with weak immune systems or a high risk of infection, such as some children with Wolf-Hirschhorn Syndrome, cannot be immunosuppressed, according to those guidelines.

    The fact of the matter is, will the transplant even take? Will the organ function at all in her body? I think the family is being unfair to CHOP here and should look for other places that may be willing to do the transplant.

    I got my transplant due to CF. And a lot of CF kids won’t get listed–for a lot of reasons. Most of them have to do with non-compliance with the CF regiment, or things like that. This is a simple matter of there aren’t enough organs to go around. Not everyone who needs one gets listed for one. Even if Amelia gets a directed donation from someone in her family, there is a lot of risk to be accrued for CHOP if they perform the surgery.

    I think a lot of us on the pro-life side are jumping to conclusions and unfairly demonizing the hospital. Transplant is NOT for everyone, mental status aside. It’s a complicated, complex issue that a lot of people are confused about and, I think, are jumping the gun here. We haven’t heard anything from the hospital.

  • Chris

    Transplantation is not always successful, especially in small children. Non-medical people often assume it will be. It can be a disaster, especially in patients who have other complex medical conditions, and who require other drugs (like anti-seizure medications) that can make the necessary immunosuppressive drugs difficult to manage. There are other options open to this child–including dialysis. Donation by a living donor is possible, but there may be a size issue as well. An adult kidney may not fit. There may be willing donors–but they may not be able to do so due to their own medical conditions or to immunologic incompatibility. Dementia, serious psychiatric diseases, and developmental delay all are taken into account when decisions are made to offer a kidney transplant–because failure to tolerate or comply with immunosuppressive drugs will result in rejection and the loss of the donor kidney. Transplantation is only done if it is likely to result in an extension of life beyond that likely to be achieved with dialysis, and it does not increase discomfort and disability. This is an “extraordinary” therapy, and is not for everyone–especially deceased donor kidneys, which are in short supply, more so for children. We have not really heard the side of the medical team, here, and it is unwise, I think, to assign malignant motives to them. I agree with Dorcas.

  • ahem

    See, folks? This is the result of supporting abortion rights: the human life is no longer sacred. Not yours, not mine–not anyone’s. If the most innocent among us can be put to death for utilitarian reasons, then everyone else is fair game under the right circumstances. Imagine being denied healthcare because of some inconvenient actuarial data. Imagine it hard because it is coming your way, and it doesn’t care what your religion–or lack thereof—is.

    Forty years ago, we surrendered the idea that a human life is sacred. Now for the fallout.

  • Charlene

    Elizabeth: I don’t think you realize how irritating it is to read: “Right now, I kind of wish Ted Kennedy were alive. Many don’t realize it, but a case like this was precisely the sort of circumstance under which he’d pull together his little Irish cabal of doctors and friends and get the thing done.” Sort of like he got together his little Irish cabal of doctors and friends and policemen and get the Mary Jo Kopechne “thing” done? You’re missing the point – no one in this country should have to deal with what happened to these parents, not just those who happen to know rich and powerful democratic senators.

  • Nate Whilk

    President Obama — “We are God’s partners in life and death.”

    Dickens, “A Christmas Carol” —

    “If these shadows remain unaltered by the Future, none other of my race,” returned the Ghost, “will find him here. What then? If he be like to die, he had better do it, and decrease the surplus population.”

    Scrooge hung his head to hear his own words quoted by the Spirit, and was overcome with penitence and grief.

    “Man,” said the Ghost, “if man you be in heart, not adamant, forbear that wicked cant until you have discovered What the surplus is, and Where it is. Will you decide what men shall live, what men shall die? It may be, that in the sight of Heaven, you are more worthless and less fit to live than millions like this poor man’s child…”

  • Ted Toolage

    The irony that is Ted Kennedy? The major point is missed – he wouldn’t care a rat’s @ for your daughter, just the political mileage. That’s the whole point of the Left and the Democrats – it has nothing to do with restrictive healthcare for a mentally ill child. It has Everything to do with being the “right kind of person” [to benefit the 'cause']. The child would be put at the top of the list if her parents were the “right people” or it would benefit the “party” to do so. If you’re the “wrong” kind of people, doesn’t matter how well you medically qualify, your organ is going to someone else. THAT’s the real direction “managed” healthcare is going. Free markets would put YOU in the position of Ted Kennedy – with the right amount of $, your kid gets treated instead of the right amount of ‘political’ connectedness.

  • Andrew

    Welcome to obamacare.
    And kennedy wouldn’t help you unless you are a family member. You are not a member of the liberal elite. Get used to it.

  • Andrew

    PS
    Very sorry to hear about your daughters condition. I will pray for her recovery.

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  • Maureen

    Just because Kennedy was a giant crook and creep on many subjects, and just because he was chronically unwise, doesn’t mean he didn’t have a soft spot for little kids with mental development disabilities. His sister had Downs, and his family did bad stuff to her. So he tried to help kids in a similar situation. So yeah, I wouldn’t want to ride in a car with him, but a little kid with severe disabilities would have been perfectly safe. It’s one of those paradoxes of character.

    St. Gregory the Great’s book Pastoral Care has a lot of interesting things to say about bad men who sometimes do good things. Sometimes they use it as an excuse to stay bad (“see, I’m good”), and sometimes it’s the little bit of light in them, trying to become a better person or not get worse. It was something he could work with, either way.

  • Maureen

    Anyway… the point is not “Ted Kennedy, thou shouldst be living at this hour!” but that somebody with clout and connections, who cared, would be a useful thing for our society. Unfortunately, the current liberal political elite don’t mostly have such sympathies.

  • John Skookum

    I’ve have doctors scream at me, for bringing my son into their office.

    I don’t believe you.

  • Joe

    I understand why people are upset about this. I read some of the other posts from the mother and her child has has a lot of issues resulting from WHS. These guidelines are not a surprise though. They are freely available on the web. I do not understand why they would be so shocked all of a sudden.

    It does seem that her daughter meets more than one criteria for not gettting a kidney though. The immunosuppresion problem, her heart problems, other undisclosed problems that are common to WHS. I think there is more to this and that some information that would hurt her point is being withheld by the mother.

  • http://catholicsensibility.wordpress.com/ Todd

    “Socialism kills. Death Panels kill.”

    Talk about conservative cannibalism, calling Arizona Republicans socialists. The new conservative pc-speak: what we don’t like = socialism. Okay, folks, you don’t have to eat your socialist spinach before having your dessert.

  • http://www.michael-carper.com Michael Carper

    Their Facebook page is getting killed right now:
    https://www.facebook.com/ChildrensHospitalofPhiladelphia?sk=wall

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  • J. W.

    Todd: “The best solution is to junk all insurance providers and go to national insurance for all. [...] At least the with the federal government we can vote people out of office when their policies shift to benefit the 1%.”

    If you want government health insurance or health care, keep it at the state level. It’s easier to vote out state and local officials with regard to such matters (although, to the extent that policies are developed by unelected “experts,” voting may not make much difference either way). Plus, this would allow different states to handle matters differently in accordance with their respective situations, and those that do well can serve as models for others. A one-size-fits-all approach to such a large and complex part of society is just asking for trouble.

  • Rollory

    “Amelia’s life is the life she has. She’s entitled to it.”

    But she is not (no more than I) entitled to a transplant.

    Before you blow up: I do agree that if the family can find a volunteer specifically for her without going through the system’s donors, and can pay for the operation, then there is absolutely no problem and no moral reason to prevent the thing from taking place. In matters of health care, however, the word “entitled” is very very dangerous and becoming more so with every day and every emergency room that closes and every extra percentage point of the federal budget swallowed by Medicare.

  • Joanna

    No matter who donates the kidney, transplant is INCREDIBLY expensive and results in immunosuppression, which is also INCREDIBLY expensive to maintain and to deal with the resultant infections. It would also be painful and frightening. Some might consider that an expensive version of child abuse if the child is not able to be aware of the situation and participate in the decisionmaking, now or ever.

  • will

    i gave a kidney to my brother.
    guess i should stop calling him stupid
    love is the measure, not IQ

  • megthered

    Both of my parents were diagnosed with Alzheimers. My mother died in 08 but my father lives with my husband and me. I went through doctors like a hot knife through butter until I found one that would treat my parents with dignity and respect. Even the geriatric specialists thought I should let my mom die when she had pneumonia. He was quickly ushered our of the room. Doctors today are trained to treat patients that they can cure. It is very rare to find a doctor who will treat a chronic patient with a prognosis that is always fatal. Fortunately, I have been in the medical field for 30 years and will not put up with it. I have heard too many times, the doctor recommending that family not treat their loved one, because their disease is fatal in the end. And families go along with it because it’s what the doctor recommends. It is one of my huge problems with modern medicine, we don’t see the patient, just the disease.
    This family needs to fight, and we need to help in any way we can. And our medical community needs to get a heart, but I’m afraid it’s too late for that.

  • Rhinestone Suderman

    John, do you really think I give a rat’s—whisker, as to whether or not you believe me?

    Believe it, or don’t believe it, I do not care. I know what happened.


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